Journalism Ethics 101 – My Conversations with New York Times Reporter Janny Scott

In 2005, I was interviewed by New York Times reporter Janny Scott about the Incarnation Children’s Center (ICC) scandal. My investigation had revealed that orphaned children were being used in taxpayer and Pharma–funded drug studies in a Catholic orphanage in New York City.
The studies involved FDA Black-Box labeled drugs, in high doses and combinations. (The FDA Black Box label indicates that a drug has caused permanent damage or has killed patients taking the drug, at its normal, prescribed dose). Orphans were receiving a half dozen of these drugs at once.

My published work featured interviews with the medical director of the ICC, and children, guardians and current and former employees from the drug-test orphanage.

In my reporting, I reviewed and cited the medical literature on the putative Aids drugs and HIV tests used in the ICC orphanage.

I named and reviewed the studies listed in the government’s clinical trials database (clincialtrials.org) that were being conducted at the orphanage and its referring hospitals.

In the course of my reporting, I had also been able to enter the ICC orphanage itself, undercover, with one of the families I was working with, and I reported on what I experienced in meeting the children held there.

The story was followed up by numerous news agencies, and spawned several independent investigations, as well as a BBC documentary (that was later attacked by pro-pharma/drug activists).

The New York Times caught up with the story by mid 2005;Times reporter, Janny Scott, interviewed me by phone and then in an email correspondence that lasted over a month. I supplied her with referenced material, and also with contact information, phone numbers and names for my inside sources (as well as my sources permission and agreement to be interviewed by the Times).

Ms. Scott (and her junior writing partner, Leslie Kaufman), also had access to all the materials already published on the ICC story by myself and independent news agencies [1, 2, 3].

She took my interview, sources and information, but suppressed all of it in her reporting. She did not cite me correctly relating to the publication of my article. She misquoted me from emails that I sent her, and she actively suppressed the sources I gave her, who had inside information about the ICC trials.Her report did not list a single recorded negative drug side-effect, FDA drug warning, or any of the actual studies being done at the ICC; nor did it feature the testimony of any parent or guardian of a child who was being asked or forced to take these drugs.

Here is what Scott wrote about the trials for the New York Times [5]:

“It was seen as one of the great successes of AIDS treatment. In the late 1980’s and early 1990’s, hundreds of children in New York City were dying of AIDS. The only approved drugs were for adults, and many of the patients were foster children. So doctors obtained permission to include foster children in what they regarded as promising drug trials.”

Later in the article, Scott admits that the “permissions” for many of these children are “missing,” (or were never there).

She continued:

“[T]here is little evidence that the trials were anything but a medical success.“

As to the controversy, Scott summed up the piles of research on drugs and studies that I’d published, and that I sent her, as well as her interviews with me and my sources – mothers of children from the ICC – this way:

“Most of the [ethical] questions have arisen from a single account of abuse allegations – given by a single writer about people not identified by real names, backed up with no official documentation as supporting proof, and put out on the Internet in early 2004 after the author was unable to get the story published anywhere else.”

She concluded:

“Whatever the outcome, the controversy has already demonstrated the power of a single person armed only with access to the Internet and an incendiary story to put major institutions on the defensive.”

At the time of publication, I, and others, wrote critical letters-to-the-editor to Ms. Scott and her employers, but neither she, nor her editors responded to them, and the Times never printed a single opposing view to their front-page story.

In 2008, I tried again, and wrote Janny Scott, again addressing my concerns to her. She responded, and in the course of this second correspondence, she admits that she had not, in fact, read or reviewed a single medical record of any of the children who were given the Black Box drugs, despite having claimed (on the front page of a national paper), that the trials weren’t “anything but a medical success.”

She also admits that she took, but did not use, interviews with my major sources, mothers who had children in the ICC.

She agrees that she did receive materials from me on the drugs in question, but likewise did not use (suppressed) the information.

She also claims to have forgotten or lacks the ability to remember important pieces of information, including whether she did or did not interview the medical director of ICC, Dr. Katherine Painter [4].

The correspondence ends with a letter from myself to Janny Scott and her editor, Joe Sexton, containing twenty questions regarding the ethics, standards and practices employed by the New York Times in reporting contentious pharmaceutical issues, such as the use of orphaned children in Black-Box-Drug clinical trials.

Neither Janny Scott, nor her editor, have responded.

Media and legal inquiries are welcome. Please read the letters and see the open challenge at Rethinking Aids.

Thank you for your note. I will attempt to address your questions in the order you raised them.

As you know from our conversations in 2005, the aim of the article the Times published was to explain the history and context of the controversy that resulted in 2004 and 2005 from your article; we did not presume to determine the relative advantages and disadvantages of, for example, using AZT or micronutrient therapy or other approaches in children with HIV in the late 1980’s. We are newspaper reporters, not biomedical researchers.

We never suggested, as you say, that the cases you cited in your article online were “made up stories.” We simply noted that the article that had triggered the controversy did not include the actual identities of the people involved in cases you cited. As you know, the use of anonymous sources and pseudonyms in journalism is noteworthy, in that in some people’s eyes it can influence the credibility of allegations being made.

Yes, we interviewed many people whom we did not end up quoting in the article. That is common practice in heavily reported newspaper pieces. It is simply not possible to include comments from every person one interviews and to still produce an article of a length that a newspaper can run.

What are the “many factual errors” you say were made in describing the article cited? And I don’t know what you mean about “ridiculing” the fact that you know some people who are alive 20 years after their diagnosis.

There seems to me nothing ridiculous about that. It’s simply a fact that, it seemed to me, understandably influenced the way you viewed what was done at ICC.

I am quite certain that I did not “mis-report” what you told me about the publication of the original story. You certainly did not tell me that it was “in line at Red Flags Weekly and Mothering magazine” and that you decided to pull it. You never said, “Nobody on the Left would touch it.” The quote I used was a direct quote and would not have been changed.

Finally, you say you sent several notes after the piece ran “but never heard back.” The Times moved a year ago so I no longer have a lot of older files, but I do not recall receiving your notes and am quite certain I would have responded had I received them.

Sincerely,

Janny Scott

—————————————————————————————————————–

SIX – Sunday, June 29, 2008, From: Janny Scott To: Liam Scheff.

Liam,

No, we did not review patients’ medical files. I would be surprised if that would not have been a breach of patient confidentiality if someone had shown them to us.

An unexpected side effect would have been a side effect not previously seen in response to those drugs, presumably.

Advanced testing methods were the methods available at the time for diagnosing HIV infection.

I do not recall interviewing Dr. Painter but I may simply not remember. As you know, the Times moved to a new office a year ago. It was not possible to move all of our files. In my case, I threw away files that were more than 12 months old. As you know, the story you are asking about was done in 2005.

I do not recall which studies we looked at. There were a lot of them — some more easily accessible than others, as you know.

As for mentioning side-effects and FDA warnings, there are side-effects and FDA warnings on many if not most drugs. The side-effects of early AIDS drugs have been written about extensively. And, as I have said before, we were not presuming to judge whether or not experimental AIDS drugs should have been tried on children — a question that I suspect few journalists would be qualified to answer; we were attempting to put a public controversy in context.

If you have further objections to the way the story was handled, I suggest you contact Joe Sexton, the editor of the metropolitan news section of the paper and the editor on that story.

I’ve been reviewing your responses, and have discovered many serious inconsistencies in your answers. I was interviewed at length by you in 2005, and was misrepresented and misquoted by you in print. I have sent letters to the editor that have never received a response or been printed in your paper.

Please address answers the following, to myself and to your editor.

(Please find attached a record of our current email correspondence, the letters-to-the-editor sent to the Times in 2005, and three letters from our 2005 email correspondence).

1. You said that the purpose of your story was not to render a verdict on the ethics of the drug trials at the ICC orphanage.

You wrote: “We did not set out to render a verdict, a decade and a half later, on the rightness or wrongness of experimental drug therapies used in the late 1980’s on children with HIV.”

But your story opens with the line:

“It was seen as one of the great successes of AIDS treatment. In the late 1980’s and early 1990’s, hundreds of children in New York City were dying of AIDS. The only approved drugs were for adults, and many of the patients were foster children. So doctors obtained permission to include foster children in what they regarded as promising drug trials.”

You later admit that the “permissions” for many of these children are “missing,” (or were never there) but that fact doesn’t affect your opening pitch. You don’t bother to entertain the question of ethics around inventing “permission” to use orphans in clinical trials. You support it, from your opening line.

A few lines later, you add:

“[T]here is little evidence that the trials were anything but a medical success.”

You provide no data in any portion of your article on any study done on these children at the ICC. You provide no medical data or personal interview from any child from the orphanage. You provide no data on the effects of the drugs used on any individual who was enrolled in any of these trials. You describe no negative effect of the drugs. You credit them with saving lives, but you give no single example of a life that was saved, and you buried the stories of women whose children were made sick from the drugs.

You rendered a verdict from the opening. Your claim to have done anything else plainly dishonest.

Q1: What is the New York Times’ policy on reporting the details of drug trials?

Q2: What is the New York Times’ policy on reporting “missing permissions” for orphans used in drug trials? Is it standard practice to defend organizations that claim to have “missing permissions,” that they can only claim to have ever had, in order to justify the use of orphans in drug trials?

2. You say that “there is little evidence that the trials were anything but a medical success.” But you admit to not reviewing a single medical case history. You wrote: “No, we did not review patients’ medical files.”

Q3: Did you interview any children from the ICC?

Q4: Did you ask them about their health on and off the drugs, or about the effects of the drugs?

You also revealed no study data, and no drug warnings or effects.

Q5: On what grounds do you make a claim that these studies benefited any particular or specific child?

Q6: Can you name and give a detailed history of any particular child who was benefited by any of the three dozen studies done at the ICC?

3. You quote Dr. Stephen Nicholas, who set up the orphanage as an NIH clinical trial center, saying that “no child ever had an unexpected side effect” on the drugs at the ICC. The drugs in question are AZT and its analogs, Nevirapine, and protease inhibitors, including Ritonavir.

You wrote me saying that “An unexpected side effect would have been a side effect not previously seen in response to those drugs, presumably.”

You stated that you did not list a single FDA warning about the drugs used here because: “there are side-effects and FDA warnings on many if not most drugs. The side-effects of early AIDS drugs have been written about extensively.”

Q7: Did you research any of the “expected side effects” of AZT and Nevirapine?

Q10: If the FDA has recorded that a drug has caused permanent disability or death in adults who’ve taken it, at its normal, prescribed dose, what is the New York Times’ policy in reporting that?

Q8: Do you know why these drugs have an FDA Black-box warning?

Q9: Why did you not report on any of the “known side effects,” in an article about the allegations that there were major side effects experienced by children at the ICC who were put on these drugs?

4. You stated that “We did not set out to render a verdict, a decade and a half later, on the rightness or wrongness of experimental drug therapies used in the late 1980’s on children with HIV.”

Q11: Why are you referring to the “late 1980s?”

The ICC trials began in 1992 and continued, in various forms, through 2004 or 2005. From ICC’s webpage (as of 2004, when they took this information down):

“In 1992, an outpatient clinic for HIV-positive children was established; the same year, with funding from the National Institute of Allergy and Infectious Diseases, the clinic became a sub unit of the Columbia University Pediatric AIDS Clinical Trials Unit…”

The page also gave a list of trials active at ICC in 1996. As for what happened in the late ’80s, I’ll refer you to their webpage once again:

“Pediatric AIDS was first recognized in 1982-83. Early in the epidemic, HIV disease of childhood was considered to be down-hill course leading to death. But in the late 1980’s, before AZT was available, many very ill children admitted to ICC got dramatically better with proper nurturing and high-quality medical and nursing care.”

Imagine that? Better without AZT, says ICC, in the “late 1980’s.”

When I interviewed Dr. Katherine Painter, ICC’s medical director, in 2003, she told me that children in ICC could participate in clinical trials by being enrolled in local hospitals. From my 2003 interview with Dr. Katherine Painter (Quoted in “House that Aids Built,” 2004; in the New York Press, “Orphans on Trial”, 2004,; and reprinted with audio at http://www.aras.ab.ca/articles/icc/PainterInterview.html).

Dr. Painter in 2003:

“[A]nd again, many clinics that refer to us are participating in clinical trials programs.

So if a child is on a treatment protocol, they would undergo that monitoring, testing, protocol entry, supply of an experimental drug through um, their outpatient clinic – and we can maintain that treatment here.

So If a child is on an experimental drug, the um, clinic site supplies the drug to the child, and their caregiver of course is the one who actually picks it up, either the nursing aid who accompanies them from a store or their parent or caregiver, and brings it back, picks it back to us if, if it’s not a drug that’s available through a pharmacy.

Currently the children who’ve been recently here who’ve been on newer therapies have been on T20 or Fuzeon, and it’s now available through a progressive access program from a pharmacy, which is Hoffman La Roche – and previously until very recently was the children who were receiving it were in an expanded access clinical protocol.”

[end citation]

She’s describing enrollment of ICC wards in late 2003 into clinical trials and “expanded access clinical protocols” with “experimental drugs.” The kids stay at the orphanage, and are enrolled at neighboring hospitals.

You radically misplaced and misstated your timeline. Who knows what you were writing about in your article.

5. You say you’re not sure, or can’t remember if you interviewed ICC’s medical director. You wrote: “I do not recall interviewing Dr. Painter but I may simply not remember. As you know, the Times moved to a new office a year ago. It was not possible to move all of our files. In my case, I threw away files that were more than 12 months old.”

Q12: Did you or did you not interview Dr. Katherine Painter?

It’s not a difficult question. You claim to have memory of individual lines that you attribute to me, remembered from a telephone conversation from three years ago. You claim a perfect memory of these lines, despite the fact that I dispute your use of them as wildly de-contextualized misquotes. If you claim perfect memory on these, then you certainly can remember if you interviewed the medical director of the orphanage whose studies you were defending. If you can’t remember, then it should be understood that your entire memory is suspect.

6. You interviewed Mona, the great aunt and adoptive mother of two children in the ICC, but, according to her, asked her only about my “beliefs about Aids and Aids drugs,” but not about her children, or their reaction to the drugs, or their time in the ICC.

I put this to you, and you responded:

“As for our interview with Mona, there is no way we would have interviewed her primarily about your beliefs; there was no need to since we knew your beliefs directly from you.”

I didn’t ask you what you “would have” interviewed her about. I asked you what you did interview her about. Mona is one of three major witnesses/sources for my first story. She says that you asked her about my “beliefs about Aids and Aids drugs, and little else,” and she does so on tape, and on the record.

Q13: What “did” you ask Mona about?

7. You state that “the aim of the Times story was to explain the background, history and context of the increasingly public controversy that had arisen out of the allegations made in your article.”

Q14: How did you plan to do that when you suppressed your interviews with all three of my major adult witnesses/sources for my first article:

(1) Mona, the great-aunt and adoptive mother of two children who’ve been in and out of the ICC their whole lives; (2) Jackie Herger, former pediatric Aids nurse at the ICC and adoptive mother of two children from the orphanage; and (3) Dr. Katherine Painter, the medical director of ICC?

You claim that you excised interviews from your article for reasons of space: to be able to “produce an article of a length that a newspaper can run.” But your piece ran on the front page of section one, in the Sunday edition, nation-wide. Space was not an issue.

Q15: Why did you bury the interviews with Mona and Jackie Herger?

Q16: Why didn’t you interview Dr. Katherine Painter? Or, if you did, why did you bury her interview?

You cannot claim to have been looking into the allegations made in my article without interviewing or citing these three witnesses.

8. In your article, you asserted that I told you that I could not get the first story published anywhere. This assertion is contradicted by the email record of our long exchange in 2005, prior to the publication of your article.

You grossly misquoted, misrepresented and selectively reported my telephone dialog with you, and this total misrepresentation formed the crux of your article. I’ve been interviewed elsewhere, on film, in print and on radio, and I’ve never made any statements consistent with those you attributed to me. This is because you invented them, by wildly de-contextualizing tiny portions of our over-hour long conversation.

You committed fraud in mis-representing and mis-reporting my statements, and I said so in my letters to you at the time. I’ve been vocal about it since, in interview with other journalists, and in my own published writing, but I’ve never had a response from the Times.

In our telephone conversation I absolutely informed you about the Left (Village Voice, Democracy Now, NPR) and the bias against critical reporting on Aids (which you’ve proven in practice), and I would swear in court to that fact. It was in that context, and that context alone, that I said that I’d had trouble finding an outlet for the “House” article in 2003. By the time you interviewed me in 2005, however, I’d had at least seven articles published on the subject, in various print and web outlets. The idea that I couldn’t get my work published was and is ludicrous.

I’d worked at a paper in Boston prior to publishing the “House” article at Altheal.org. I’d had a great volume of work published in print and online. Your statement was intended to create an illusion that I was not a journalist or a serious investigator. It was a specious and dishonest claim on your part, and I can only assume, it’s the angle you intended from your pitch.

I absolutely informed you that I had pulled “The House” article and research from a print magazine for the purpose of getting out faster to news agencies and the public. I have an email record stating as much.

You asked me (June 30, 2005): “I can’t seem to find in my notes the month that you posted the Incarnation article on indymedia.org. Was it January 2004?”

I answered (also June 30, 2005): “I researched and wrote The House That AIDS Built from June through Nov. 2003, started emailing it out in Dec. 2003. Had a magazine interested in Nov, but they backed out. Had an offer to rewrite it and get it out by Aug 2004 in a print mag, but felt speed was more important.”

(Find those emails attached).

You claim to be missing emails, files, etc, to have thrown items away, to have perhaps, lost items in a move. The NY Times has a century or more of archived work publicly available. If your description of your disordered and disrupted files were true, I doubt that your newspaper could function.

Q17: Do you have a complete email record of our 2005 pre-article correspondence? If not, would you like me to email you and your editor a copy?

Q18: What is the New York Times policy for misrepresenting someone in print?

9. You claim that you “do not recall receiving,” but may have lost in a move, or thrown out, my letter-to-the-editor from 2005.

You wrote: “The Times moved a year ago so I no longer have a lot of older files, but I do not recall receiving your notes and am quite certain I would have responded had I received them.”

I absolutely wrote the Times with a letter for print, immediately after the publication of your article in July, 2005. I have four sent versions in my email exchange because I sent the letter in duplicate to several NY Times email addresses, including yours, your co-writer Ms. Kaufman, and to the letters department.

I then posted the letter publicly at GNN, (where much of my reporting has been done), as an open letter to the Times editorial and letters department, and listed the Times “letters” email, in case any reader was motivated to seek a response (”NY Times to the Rescue,” GNN, July 2005).

My letter was then reposted at the website of the Alliance for Human Research Protection (AHRP.org), along with six additional letters from other journalists, researchers and doctors, who’d written the Times about inaccuracies and gross misreporting in your story (”Seven Unpublished letters to the New York Times Re: AIDS drug/vaccine experiments on babies/children in NYC foster care” AHRP.org, August, 2005).

Vera Sharav’s letter was sent to Byron Calame, Public Editor New York Times, and was copied to Victor Navasky and Michael Hoyt, Columbia Journalism Review, and Ann Pincus, Center for Public Integrity: Investigative Journalism in the Public Interest. These letters have been online and publicly available for three years.

In order for you not to have received or been made aware of these letters, you would have to have never used the internet, or have any friends who did, and also have no co-workers, or employers/editors, who receive email, use the internet, or receive feedback on their published work.

Q19: What is the New York Times’ policy on printing letters-to-the-editor from interview subjects who make serious allegations of being mis-quoted and mis-represented in print by a Times’ reporter?

10. You claimed, in your article, that the information I provided was done through un-named sources and un-documented research.

You wrote:

“Most of the [ethical] questions have arisen from a single account of abuse allegations – given by a single writer about people not identified by real names, backed up with no official documentation as supporting proof, and put out on the Internet in early 2004 after the author was unable to get the story published anywhere else.

And you concluded:

“Whatever the outcome, the controversy has already demonstrated the power of a single person armed only with access to the Internet and an incendiary story to put major institutions on the defensive.”

None of what you wrote is in evidence. It’s a total fabrication.

A. I didn’t have access “only to the internet.” I took interviews with children who’d been placed in the orphanage because their parents stopped or limited FDA-Black Boxed drugs. I had access to their medical records, and, of course, to their parent’s testimonies.

B. People were, in fact, identified by real names, in my first report, and in subsequent reporting. Jackie Herger, (former nurse at ICC and adoptive mother of children from the orphanage), and Dr. Katherine Painter (medical director of ICC) were featured in my first, second and third reports on ICC (”House that Aids Built”, “The ICC Investigation Continues”, “Orphans On Trial”), and then in subsequent reporting as well (”The ICC Interviews – Dr. Katherine Painter”, “Inside Incarnation”).

Mona, a great aunt (and adoptive parent) of two children in the ICC, was provided an alias, as were the children in the story, and I provided her real name, and contact information to you, which you used to interview her.

To make a claim that a story is potentially false because of the use of a single alias, is not defensible. To raise suspicions about the nature of a witness using an alias, is only defensible if the reporter is unwilling to share the identity of that alias. I provided her name and contact information for you in 2005, and you used it, interviewed her, and suppressed that information.

C. “No official documentation.” I listed, described and gave detailed analysis to many of the three dozen studies in the National Institutes of Health Clinical Trial database (clinicaltrials.gov), and directed you to it, to do your work. I reviewed the Physician’s Desk Reference, and FDA database on the drugs used in the studies at ICC, and gave a detailed listing of the recorded side-effects of the drugs.

D. I reviewed, listed, described and gave analysis to dozens of studies printed in the standard medical journals on the non-standardized tests and the drugs.

E. I was able to enter the physical orphanage itself, record and report my observations of what I saw, and on several children I interacted with, whose stories I followed up with my sources.

F. In late 2004, through 2005, I conducted face-to-face interviews with nurses and child-care workers who worked at the orphanage, and cared for the children, and reported on their daily drugging, and the vomiting and diarrhea, rashes and deformities, that occurred as the known and predictable result of the drugs; they also reported in great detail on the deaths that occurred – deaths that were very strongly tied to commencement of drugs or of certain drug regimens, or enforcement via stomach tube of new drugs, including Thalidomide.

G. At the same time, I conducted further interviews with adolescents who’d been residents at the orphanage, and who had been held and drugged there against their will. Some of these children had developed serious illnesses, including cancer, after a childhoods spent on AZT, and its analogues, drugs which are known carcinogens.

H. This was reported in the New York Press two weeks after your story was released (”Inside Incarnation,” NY Press, July/Aug 2005). You never did any follow-up, however, after it was revealed that your assertions couldn’t possibly have been true.

Q20: What is the New York Times policy for committing libel against a source or journalist?

I look forward to receiving your answers.

Liam Scheff

————–attachments to this email————–

Four emails from my 2005 email correspondence with Janny Scott, prior to the publication of her NY Times article.

One and Two – Ms. Scott’s request and thanks for interview, Three – her follow-up question, and Four – my answer to why I put the “House” article on Indymedia and Altheal.org.

I am a reporter at The New York Times and am working with Leslie Kaufman on a piece about the controversy over the testing of AIDS drugs on foster children. Would you have some time in the near future when we could speak?

I researched and wrote The House That AIDS Built from June through Nov. 2003, started emailing it out in Dec. 2003.

Had a magazine interested in Nov, but they backed out.

Had an offer to rewrite it and get it out by Aug 2004 in a print mag, but felt speed was more important. Crossed my fingers and sent it out to 50, 60 people. Put it on indymedia in Dec. 2003, the guys at altheal [Altheal.org] put it up for good in January 2004 – I think it says so at the top of the page.

The film company contacted me in late jan or early feb.

Doug Montero from the Post contacted me in Jan or early Feb, I still have his emails.

He interviewed me, then put out the story w/o credit. They put my name in a day later.

The published something a week or so ago, and credited me properly.

Janny, drop me a line, you had some questions for me that I’ve thought about and wanted to answer better.

LS

—————-end of attachments to this email——————-

[There has been no reply.

This email correspondence, and the published work and research listed in the references section above, provides substantial evidence that I was misrepresented, misquoted and libeled by Janny Scott and the New York Times. Neither Ms. Scott nor her editor, Joe Sexton, has responded to this accusation, or the evidence provided herein.

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